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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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2019 Oncology List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.418" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2018.10.418</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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The Quality of Life of Children with Advanced Cancer: The Perspective of Children and Parents
Publisher
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Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
advanced cancer; child; conference abstract; human; interdisciplinary communication; oncology; palliative therapy; physical well-being; pleasure; qualitative research; quality of life assessment; semi structured interview; thematic analysis
Creator
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Avoine-Blondin J; Fasse L; Lopez C; Daoust L; Humbert N; Duval M; Sultan S
Description
An account of the resource
Objective: Quality of Life (QoL) is the core of pediatric palliative care (PPC). The evaluation of QoL allows the adjustment of patient care. However, it remains difficult for clinicians to measure it in this population because there is very little empirical data on this topic. In order to identify dimensions of QoL in this context, we have, in a previous study, interviewed professionals who accompanied children with advanced cancer. The results highlighted the traditional dimensions of physical, psychological and social well-being, as well as original dimensions such as pleasure and the present moment. However, to provide an effective understanding of QoL, it is essential to capture the perspective of children and parents. This study aims to describe the QoL in the context of PPC in oncology according to children's and parents' the representations.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.418" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.418</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2018
Advanced Cancer
Avoine-Blondin J
Child
conference abstract
Daoust L
Duval M
Fasse L
Human
Humbert N
Interdisciplinary Communication
Journal of Pain and Symptom Management
Lopez C
Oncology
Oncology 2019 List
Palliative Therapy
physical well-being
pleasure
Qualitative Research
quality of life assessment
Semi Structured Interview
Sultan S
Thematic Analysis
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
URL Address
<a href="http://doi.org/10.1016/j.ijporl.2017.07.039" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ijporl.2017.07.039</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Pediatric leukodystrophies: The role of the otolaryngologist
Publisher
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International Journal of Pediatric Otorhinolaryngology
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
adolescent; dysphagia; priority journal; cohort analysis; physician attitude; nose feeding; human; article; child; adult; clinical article; comorbidity; hearing impairment; anamnesis; physical examination; leukodystrophy/dt [Drug Therapy]; otolaryngologist; 1309378-01-5 (botulinum toxin A); 1638949-86-6 (botulinum toxin A); 1800016-51-6 (botulinum toxin A); 93384-43-1 (botulinum toxin A); aspiration pneumonia; botulinum toxin A/dt [Drug Therapy]; Drool; Quality of Life; Assessment; Questionnaire; head and neck disease; hypersalivation/su [Surgery]; leukodystrophy/dt [Drug Therapy]; quality of life assessment; stomach tube; breathing difficulties; feeding difficulties; sleep disturbance; Aicardi-Goutières syndrome; Krabbe disease; leukodystrophy; Pelizaeus-Merzbacher disease; x-linked adreno-leukodystrophy; trajectory; characteristics; drooling
Creator
An entity primarily responsible for making the resource
Kay-Rivest E; Khendek L; Bernard G; Daniel S J
Description
An account of the resource
Background Leukodystrophies consist of degenerative neurogenetic diseases often associated with comorbidities that extend beyond the neurological system. Despite their impacts on patients' quality of life and risks of complications, head and neck symptomology is poorly reported in the literature. The objective of this study was to identify and quantify the main head and neck complaints among a cohort of patients diagnosed with leukodystrophies and define the role of the otolaryngologist as part of a multidisciplinary team for treating these patients. Methods During the First Canadian National Conference on Leukodystrophies held at the Montreal's Children Hospital, a cohort of 12 patients diagnosed with leukodystrophies were recruited and evaluated by a multidisciplinary team. An otolaryngology-focused assessment was done through history and physical examination, and included a screening questionnaire for 23 common otolaryngology issues. If families reported a history of sialorrhea, a validated questionnaire (Drool Quality of Life Assessment Questionnaire (DroolQoL)) was subsequently distributed. Results from the questionnaires were then compiled and analyzed. Results Of the 12 recruited patients, 83% (10/12) were known to an otolaryngologist. Drooling affected 67% (8/12) of patients although only 37.5% (3/8) of patients had undergone medical or surgical therapies for this issue. Four patients experienced at least one aspiration pneumonia. 58% (7/12) of the patients had dysphagia, of whom 43% (3/12) were fed exclusively via gastrostomy tube and 28% (2/7) required thickening of feeds. Two patients, despite suspicion of dysphagia and aspiration, had never undergone evaluation. As for otologic issues, it was noted that 25% (3/12) of patients had a history of pressure equalizing tubes (PETs) and one patient had a history of hearing loss. Conclusion Head and neck comorbidities affect children with leukodystrophies. Therefore, the otolaryngologist should be part of the multidisciplinary team, specifically for the management of dysphagia and sialorrhea.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ijporl.2017.07.039" target="_blank" rel="noreferrer noopener">10.1016/j.ijporl.2017.07.039</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
1309378-01-5 (botulinum toxin A)
1638949-86-6 (botulinum toxin A)
1800016-51-6 (botulinum toxin A)
2017
93384-43-1 (botulinum toxin A)
Adolescent
Adult
Aicardi-Goutières syndrome
anamnesis
Article
aspiration pneumonia
Assessment
Bernard G
botulinum toxin A/dt [Drug Therapy]
breathing difficulties
characteristics
Child
Clinical Article
Cohort Analysis
Comorbidity
Daniel S J
Drool
drooling
Dysphagia
feeding difficulties
head and neck disease
hearing impairment
Human
hypersalivation/su [Surgery]
International Journal of Pediatric Otorhinolaryngology
Kay-Rivest E
Khendek L
Krabbe disease
Leukodystrophy
leukodystrophy/dt [Drug Therapy]
nose feeding
otolaryngologist
Pelizaeus-Merzbacher disease
physical examination
Physician Attitude
Priority Journal
Quality Of Life
quality of life assessment
Questionnaire
sleep disturbance
stomach tube
Trajectory
x-linked adreno-leukodystrophy